This Mother’s Day, we spoke candidly with mothers and grandmothers about the joys, challenges, and the unseen load of raising children with disabilities.
Parents of children with disabilities face unique and complex challenges that can be emotionally and physically taxing. Research suggests that women are more likely to be the primary caregivers and to take on the responsibilities and emotional labor associated with caregiving, such as managing appointments, sharing observations, assisting in the plan, informing everyone in the child’s life, and advocating for their child’s needs.
This Mother’s Day, three mothers, two mothers and therapists at Reach, and one grandmother caring for her grandson, have shared parts of their experience caring for children enrolled at Reach for the Top, the only therapy clinic in the Dover, NH, area offering trauma-informed and neurodiverse-affirming therapies through a family-centered model.
Goodbye toxic positivity, hello authentic feelings and families
Raising all children, especially those with disabilities and higher needs, requires a high level of care, patience, information, collaboration, and dedication. There is no doubt that a mother’s love is unconditional, but it is important to normalize the idea that mothers and caregivers of children with disabilities can feel a wide range of emotions – from joy to pride, to sadness, anger, frustration, and fear. Amy Rich Crane, Reach’s Executive Director, a therapist, and mother of two children in therapy, acknowledges you can hold space for more than one feeling at a time, and it is natural to feel some grief when realizing your child has additional needs:
“There is a lot of joy, challenge, and growth that comes from raising all children, regardless of their needs. When parents feel grief, guilt, fear, or other strong emotions arise when learning their child has a disability or significant challenges, or when trying to help them, it is completely normal and acceptable. As a parent, it’s natural to want your child to have all the opportunities, all the successes and not to struggle. So, when you realize your child has greater needs and they may have greater needs for a long time, these feelings naturally arise because you recognize the world is not currently designed for their needs, which can make accessing play, childcare, school, friendships, and so much more, more difficult. So, yes, it is okay to grieve the life you desire for them, it is okay to have waves of fear that they may be under-supported or mistreated. Feel those feelings and let them serve as motivation to find your support networks and strategies to move forward, helping your child find success that may look different than the ‘typical’ or original plan, something that works for them.” – Amy Rich Crane
Amy Shaw, a neurodiverse mother raising two neurodiverse daughters who are both followed at Reach for the Top Therapy, has felt guilty and ashamed of her emotional response to struggles in her daily life:
“There was a time when I could not leave them and I lost myself completely. The oldest had severe separation anxiety and the baby had medical needs that only I seemed to understand. My husband would give me such a hard time if I left him alone with the girls, even to go to the grocery store! After coming home from a 12-14 hour day at work, I handed the baby to my husband and locked myself in my bedroom crying. Every day was so hard for me as a parent, I was lost and desperate for help.” – Amy Shaw
It is not uncommon for parents of children with disabilities, most often the mothers, to have mental health struggles. They may feel constant worry and anxiety about their child’s health and well-being, as well as concerns about their child’s future and the long-term impact of their disability. It is okay to seek help, and there are resources to support you.
Recognizing and sharing the mental load
The term ‘mental load’ refers to the invisible and often unrecognized burden of mental work that falls primarily on mothers. It encompasses the emotional, cognitive, and organizational labor that goes into managing a household and caring for others.
Mothers and caregivers work tirelessly to ensure their child has the best possible quality of life, and are often responsible for managing the additional appointments, therapies, medications, and carryover of strategies for their children. They are responsible for navigating complex healthcare and educational systems, advocating for their child’s needs, and coordinating care between different healthcare providers, educational providers, and caregivers at home. Robyn Thomas, a therapist at Reach with two of her own children in therapy, talks about wearing many hats as a mother:
“Having to constantly balance my responsibilities and role within my full-time job and my role as a mother of 3 children at home can be very challenging and overwhelming at times. I find that there are days where I catch myself really missing being home with my children, especially when my children begin telling me how much they miss me while I am gone. Many of the working moms that I know within my support system agree that we all share this challenge, but it is also what connects us.” – Robyn Thomas
Find your village and don’t forget to care for yourself too
We often hear that it takes a village to raise a child, and that is true. The modern 40-hour work week was not designed to accommodate building relationships with your children, chores, making meals, having play dates, extracurriculars, and having hobbies for caregivers, let alone caring for children with disabilities.
It’s essential for parents and primary caregivers of children with disabilities to have a strong support network. Find your village, the community you can lean on, whether it is family, friends, other parents who share similar struggles, or even therapy providers. For Katie MacKinnon, Reach’s Board of Director Chair and mother of Claire, who has been in therapy for speech delays, sensory processing issues, and food aversions, this is a priority:
“Find support right away and don’t feel like you have to figure it all out on your own. Reach For The Top is naturally a great place to start on your family’s journey, but also ask your children’s school staff, pediatricians, and fellow parents in your community for resources and support. By sharing our experiences, we can be stronger together for our children and ourselves.” – Katie MacKinnon
Carole Hartigan, who took over as her grandson’s caregiver after 3-year-old Nathaniel’s father passed away, has found her support network in the other family members affected by this loss:
“I see myself as an important advocate for Nathaniel and this role is vital because there are several family members who have become loving caregivers in the absence of his Daddy. We call this “Team Nathaniel”. Everything and anything I learn in Occupational Therapy, I write down in a group email and send out to inform the “Team” about what happened.” – Carole Hartigan
Another very important thing is that mothers and parents of children with disabilities take care of themselves. This can include seeking out mental health support, finding time for self-care, and connecting with friends and family. Parents should not feel guilty about needing their own support or for taking time for themselves, as it helps them be better caregivers for their child(ren). It is something that many mothers struggle to prioritize and something that those within their trusted network can help support.
“One challenge that has been hard for me lately is time management with all the different appointments. I often find myself putting the needs of my family and friends above myself and feeling like there’s just not enough time in the day to take care of me.” – Janyce
In addition, caregivers of children with disabilities often struggle to find care that meets their child’s needs and aligns with their parenting and learning style. Depending on the disability, a child may require specialized care from multiple healthcare professionals, which requires not only high levels of collaboration and communication but finding the right fit.
“Make sure that you find a provider that really listens and includes you as a family. Also, make sure they make it fun. Kids are motivated by play, positive experiences, feeling a sense of mastery/accomplishment, and connection. It looks different for each child and family and great therapists understand that and tailor it to their needs. If something feels off, I encourage you to speak up and see what can be done.” – Amy Rich Crane
Another challenge parents of children with disabilities face is finding appropriate educational support for their children. Due to many complex challenges in funding, knowledge, and systems, many school districts are missing the mark in supporting the unique needs of children with disabilities, and parents may have to fight for their children to receive the accommodations they need to succeed. This can be a long and frustrating process that parents are often in need of support in, many times the mothers, that then either put countless hours into advocating within their school district or turn to private schools or homeschooling to ensure their child receives a quality education.
“My daughter was diagnosed with ADHD and Anxiety. With this, I pulled her from her private school and went to public. I took everything I had learned about my child and laid it out for the school. I shared my concerns and started the Individualized Education Program (IEP) process, during which I was told my girl was ‘too smart’ to qualify for an IEP or even for a 504, which covers students who don’t meet the criteria for special education but who still require some accommodations. After two years, a few incidents where her needs were neglected, and a lot of fighting with the school district, I sent her to a new private school.” – Amy Shaw
Reach has partnered with several mothers, school districts, and daycares that have reached out to have in-services on support delivery that is affirming and provides tangible support recommendations so that children and families feel better supported and provide the knowledge gap backed by evidence and clinical experience. At Reach, we will continue to do all we can to acknowledge the hard work mothers of children with disabilities and exceptional needs put in, how real the challenges are, how normal their feelings are, how important self-care and a network of support is, and to help connect them to resources that can further support their and their child’s unique needs.
All parents are highly valued at Reach and on the journey to supporting children and empowering families. We recognize that 65% of the time, mothers are there at Reach adding more to their to-do list to support their children and families. We are encouraging everyone to reach out to a mother this weekend and offer support:
- An hour of watching their child so mom can care for themself;
- Bring over dinner;
- Help with a chore;
- Take something off their plate for a day so they can put time back into themselves;
- Be their cheerleader, acknowledge their feelings, validate them, and listen. Sometimes they just need someone to listen to all the good and all the challenges, without judging them.